Friday, March 19, 2004
Fairy tales , dragons, a few princes... what an adventure
I feel as though I have been living in a fairy tale for the last several years with a few dragons thrown in for good measure. Along the way there have been a few princes.  I guess I have a story to tell......

A long time ago....I had a very different life. 

I grew up all over the world as an Air Force brat.. We lived in so many places and made friends quickly. I have 4 brothers who are each terrific in his own way and my folks are still together after 49 years... I had a good childhood with a lot of love and life was good.  I spent 5 years in the Air Force myself and traveled and learned more each year. I was a weather specialist and Air traffic controller.  It was a wonderful adventure for a young single woman coming up in the world and into herself.  So many good people's influence, experiences, cultures and traditions. Wow life was good.  It was not something I wanted to do for 20 plus years but for 5 years...a wonderful experience.

I was still trying to figure out what to do with the rest of my life when I met a man who changed my life. He is the most gentle, loving, understanding man I have ever met. He became my best friend and almost 23 years later, he still is. He is my husband, Fred.  He is in a wheelchair and has been since he was small due to polio. Doesn't slow him down any that I can tell. He is a very savvy businessman and great dealing with people. We have a successful life together. We are comfortable with each other and in our own skins. I love him deeply and we have a good life.

In December 1998, I became very ill with an infection that settled in my bloodstream.  Antibiotics seemed to scare it away for awhile but it was just laying dormant in my system for awhile. I started getting leg and abdominal swelling and my bloodwork was all over the map. I had an idiot for a doctor.(I never really needed him for much before this. Just routine stuff, so I never knew he really had no clue) He just kept ordering more bloodwork but never offering ideas or diagnosis so in August of 1999 we went to the emergencey room. I was so swollen I could barely move one foot in front of the other. My knees were as big as dinner plates and I was in so much pain I could barely breathe.  

Here is where my 1st prince makes his appearance... The ER doctor was also a gastrointestinal specialist who checked me over, ran tests quickly and admitted me in one fell swoop. I was in end stage liver distress, the infection in my blood was raging and I would not have lived through the week without his remarkable intervention. Memory is a little sketchy on some of the details of that week but, he saved my life. Got the infecton under control and drew almost 45 pounds of fluid off my abdomin and releived the stress it was putting on the rest of my body including my heart.  I Thank God for this man. He started me on the road to the right doctors and people who could finally help. He recommended the man I saw as my new Primary doctor(Said goodbye to Dr Quack) and started to get my life back on track. Although we got many symptoms under control and the infection eradicated from my body, it had done permanent damage.  It took a full year to get stable enough to even go through a liver biopsy to determine the extent of the damage.  I was in so much danger for bleeding that they did the biopsy through the carotid in my neck instead of through my side.  The biopsy confirmed that there was permanent damage and cirrhosis/fibrosis(fancy words for scarring) I always thought alcoholics were the only ones who got cirrhosis but there are apparently many kinds of it. Thus begins the learning process ....and the next part of my grand adventure.

Tuesday, March 23, 2004
Part II- The journey begins
Well, we got the bad news from the biopsy in May 99 and so I was referred by Prince #2 (my most excellent new PCP) to the University hospital hepatology team in Denver.

Meet Prince # 3 and besides my husband,  the most important man in my life. His name is Dr James Trotter and is my hero.  I went through the initial appointment with him doing examination, and a whole lot of just plain talking. We must have spent 4 hours with him that first visit and never felt rushed or uncomfortable with him in any way. He even won approval from my husbands service dog at the time (Apollo) 130 pounds of black beauty, grace, love and total dedication. He was always pretty aloof around most people. (Which is very good to be in a service dog) Never let anyone or anything distract him from his goal. I sure wish we could have cloned him. sigh...There are many wonderful dogs in the world and they all leave paw prints on our hearts but, then there is always that one special one..... You know what I mean.  He seemed to know that this man was special to us in a very important way and made it a point to be overtly friendly to him. Totally out of working character for Apollo but he allowed him into our inner circle. He seemed to know this man would help us and accepted him unconditionally.  Of course, I did my best to not squeak or make too many moans or groans during the exams. (No sense taking un-necessary chances<smile>

somehow got off track but, memories are like that. Sometimes you just wander off. Especially in the good ones..

Anyway, Dr Trotter set me up to go through evaluation for liver transplant in Aug of 2000. It seems that the damage to my liver was so severe that it could not reverse itself. The scarring was extensive, permanent, and getting worse. My liver function was down to about 25%   Now that was quite a millenium welcome. I don't do things in half measures normally, so, why should I do this any less than full steam ahead....Yeah..right    YIKES!!!!

We went home to speculate over my new situation and to let family know what was going on.  God...that was hard.  I am supposed to go through 3 solid days of marathon testing and there is no book or manual to study for these "tests"  Now, that is not to say we didn't burn up the internet lines researching everything we could think of at the time.  Not only did we scare the daylights out of ourselves, but we ended up with more questions than answers...so we waited for the date to arrive to drive to Denver.   I refuse to think of this as D-day so we are going to call it  B-Day      For the "beginning" ........

Thursday, March 25, 2004
The Beginning
Well, it was a 3 month wait to get to this day. We headed for Denver with tons of expectations and a lot of trepidation but the day arrived none the less. We stayed in a hotel Sunday night and had reservations for the following 2 nights. They say we can go home Wednesday after the last of the testing.

Day 1 of the marathon started out at 7:00AM and we put in 3 full days till 5:15 except Wednesday we finished at 4:30. The scope of testing required for transplant evaluation is beyond imagination and I never knew they had so many tests. But there were also meetings, consultations, classes and other evaluations beyond physical. i am trying to remember all the things we did and may get some out of order as i recall things.....

We met with the transplant coordinator 1st who said hello and greeted me with a quart size bottle of contrast to drink for a catscan later in the morning. And so it begins.... We met with the coordinator and Dr Trotter(prince # 3) and went through the list of times and tests and a map of how to navigate all these labs and offices and exam rooms and off we went. I don't remember taking my clothes off so many times in a week as I did those 3 days. Of course, the fashions were as delightful as ever. Some more revealing than others. Kind of like when I was a teenager at a store trying on new outfits only....well you know how it is. They can chage the colors of some garments but the style was just not mine...

The first thing they did was draw 22 tubes of blood (knowing that any one of them could put me out of the running) i was pretty nervous, a lot nauseous, and a bit light headed. Of course with all these tests to go I had nothing to eat or drink since 6PM the night before so that may have contributed. They also did the usual weight, height Blood pressure, pulse ox(that one was new to me)etc routine stuff. Then we were off and running(almost literally as the schedule was tight) Its not like when you go for a test or appointment these days when you mostly wait. They waited for us on many of these and we never stopped or slowed down.

We went to a respiratory lab(also new to me) and they did all the resp tests, stuff that big thing in your mouth stick a clothespin thing on my nose and sit in a clear plastic toy car looking contration. They wanted me to blow out more than breathe in which seemed counter productive in my mind but guess its what they needed. Other breathing tests and my very first ABG(arterial blood gasses) All I can say about that one is OOOOWWWWWW!!!!

I went to the catscan lab next.(I had been drinking that gunk for over an hour and so that was next. Start an IV and get to gulp another glass of contrast right before they started yuck...and then find out that the dye they use did a number on me. Woke up to see waaay too many people in the room including my husband complete with service dog APOLLO(unhappy dog) only to find out the iodine in the dye is a no no for me. OK, so now we know another new thing.....See how much I am learning on my adventure? Ya gotta laugh or you go nuts...so I laugh,(a lot) I didn't even know I could have a nap during that test. I knew I should have studied.Rats!! Onward>>>>next stop is another test that you need an IV for and thankfully the catscan folks knew that and left the one in my arm that they installed. (It certainly felt like an installation and so I should get to keep it awhile) and after that test, we get to have a glass of water and go to a class.(Probably the class I should have had before the tests LOL) Anyway, I learned many things in this class, one was why I now have an outie instead of my pert little innie I used to have. Part of the disease process and called an umbilcal hernia. Ok, cool....Will it go away? I am not really happy with it and would be glad to give it back. Maybe it will go away after transplant.....sigh...maybe Also learned the names of some new and wonderful anti rejection drugs that they were trying and all their little idiosyncracies and nasty side effects that I would get to keep for the rest of my life if I get the transplant Hmmmm Are we really sure I need this transplant? Maybe things will get better by themselves...Or not. I had meetings with the rest of the people on the transplant team one at a time including the Social Worker Michael(nice guy), the dietician(says I don't eat enough...sorry), the anesthesiologist(interesting meeting), the team psychiatrist(now how in the world was I supposed to study for that one? But he was ok)Also Fred had to see him(I thought that was fair...smirk) Actually, the main thing they were looking for was a support system in place and how we were handling things etc. All in all it was not bad. We got to sit down with the surgeon who was in a very good mood and seemed to like his job a lot. I kind of drifted out of the conversation though when he described the liver as basically a big bag of blood.EewW...Pretty graphic picture but he told it like it was in a way we could understand easily and made it sound like a snap....Uh huh.. We also met with the financial person(do you know that this is the most important person on the team?) They like to know all about insurance coverage etc. Fortunately we must have had the right answers for that one as we got the wave on to the next test. VQ scan to check for any blood clots in my lungs etc. all ok there too. Somewhere towards the middle of day 2 I went to the heart center and had EKG(also a first) a few other machine things and a delightful test called a dobutamine stress echo. It is a drug induced heart stress test. No exercise involved. Goal-get the heart rate up to 150 and sustain it for 1 minute. No problem doc. HA... i have a very low heart rate normally about 58-60 Using another IV(they took yesterdays back before we left) they put this drug in called dobutamine gradually raising heartrate and when I thought my heart was going to jump out of my chest and run screaming down the hall, they said nope its not going high enough. (Huh?)So we add another drug called atropine to the mix...still not enough so we add atropine again. They got my heart rate to reach 150 one time but could not keep it above 140(meanwhile they are doing the ultrasound at the same time) I could not handle that kind of heartrate..so I did what anybody else would do to get them to stop....I turned blue and could not breathe. It really works, try it sometime. LOL They decided to do something called a bubble test while they were there and then they stopped. Again the room seemed to get awfully crowded. I remember thinking that it sure took a lot of people to do some of these tests. I was finally allowed to sit up after the heartrate slowed down enough to breathe again. They called the transplant coordinator and told her we would be late for the next class and made me drink some juice and eat part of a muffin before they would let me leave. They would not listen when I told them I did not have time for a coffee break and that Tracy was going to be mad if we were late. Sure enough, she came down to see us in person. But she was great, said to get there when we were done and she would go over what we missed. Pretty nice lady actually. And so it went on and on for the next day and we were sent home. We were told that the "board" would meet and go over all my tests the following week and we would get a phone call the Monday after that to let us know if I was to be listed for transplant or not. That was the longest and hardest time to deal with. Not to mention how lousy I felt after all the poking and prodding and classes and meetings...Sheesh, even my brain hurt and I was black and blue for weeks after. No matter what we think, time eventually does pass and we got the phone call about my status. Results had been gone over by everyone and they decided that due to the stress echo results I could not be listed for liver transplant right now. I had something called pulmonary hypertension and I needed to see a different kind of specialist for that disease. But they were very sorry.....What? They scheduled the appointment for me and told me to have her call my liver Dr after she had seen me. I was to see her in a couple of weeks.